Hi everyone,
My name is Emily, daughter of B__, who has been suffering from PN or PNE for 2 years. Mom was a very youthful and active 58 when stricken in 2009. Her pain quickly reached a 9 in any position, lasting all day, robbing her of the ability to focus on simple things like reading or watching a movie. Fortunately the pain is absent while she sleeps. Mom was diagnosed by Dr. Gordon in Toronto (thanks to this site we found his name and figured out what mom had). She had nerve blocks but no lasting results. She has tried many meds but only methadone cut her pain to a 4-6 on the pain scale, however it has recently stopped working and she is having to wean off of it. She is desperate to have surgery, and is looking to Dr. Robert in France as well as Houston. If anyone has a phone number or list of requirements for Dr. Robert it would be appreciated as we have applied with a letter but not heard back yet.
My siblings and have been gleaning much information here and wanted to say thank-you for sharing. This site truly does offer hope.
To be able to nurture her grandchildren is mom`s deepest wish; like everyone else here, she just wants her life back.
All the best to you all!
Emily
hello from a lurker
hello from a lurker
My mom, B__, has been a PN/PNE sufferer since 2009. Suspect cause is scar tissue from major pelvic surgeries in 1980`s due to ulcerative colitis. Live in Vancouver. Diagnosis by Dr Gordon 2009, Toronto.
3 diagnositc ultrasound-guided blocks by Gordon/Peng 2010.
1 CT guided block by UBC team in 2011.
At Women's hospital in Vancouver for pain management. Have tried most meds without lasting success.
Exploring options for surgery.
3 diagnositc ultrasound-guided blocks by Gordon/Peng 2010.
1 CT guided block by UBC team in 2011.
At Women's hospital in Vancouver for pain management. Have tried most meds without lasting success.
Exploring options for surgery.
Re: hello from a lurker
Oh Emily,
I am so sorry for what your mom is going through. What a wonderful daughter she has that you are taking the time to get familiar with and aid in finding her help.
I am sure that there is someone who can answer your questions, I wish had the info to the Dr's you requested. Best of luck!
My thoughts are with you all
MOM
I am so sorry for what your mom is going through. What a wonderful daughter she has that you are taking the time to get familiar with and aid in finding her help.
I am sure that there is someone who can answer your questions, I wish had the info to the Dr's you requested. Best of luck!
My thoughts are with you all
MOM
Re: hello from a lurker
Hello Emily,
You are such a wonderful daughter to be advocating for your mom.
You could try contacting Judy B at this website http://www.pelvicpain.org.uk/ for info on contacting Dr. Robert. Otherwise the only info I know of is posted on the forum here: http://www.pudendalhope.info/forum/view ... ?f=46&t=33
Best wishes for your mom.
Violet
You are such a wonderful daughter to be advocating for your mom.
You could try contacting Judy B at this website http://www.pelvicpain.org.uk/ for info on contacting Dr. Robert. Otherwise the only info I know of is posted on the forum here: http://www.pudendalhope.info/forum/view ... ?f=46&t=33
Best wishes for your mom.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: hello from a lurker
Hi Emily,
Your mom is icing her perineum, right? This really helps with pain flares. Also, she has a proper pillow with a hole in the middle that allows her perineum to hang freely without being compressed? Please go to the home page for more info.
Next time your mom comes to Toronto please PM me and I would be happy to meet her.
You are very sweet to help her out with her condition. She is very lucky to have you by her side.
Your mom is icing her perineum, right? This really helps with pain flares. Also, she has a proper pillow with a hole in the middle that allows her perineum to hang freely without being compressed? Please go to the home page for more info.
Next time your mom comes to Toronto please PM me and I would be happy to meet her.
You are very sweet to help her out with her condition. She is very lucky to have you by her side.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com